Therapy or not? That is the question!

In fact it was never a question to me. We started a stimulation program a long time before we got the right diagnosis. And when we finally got the diagnosis, the 'specialists' promised us such difficulties with Rett syndrome itself that it couldn't be compared with any intensive therapy we choose. My thoughts were: if life with Dejana is going to be unusual anyway, let's do the therapy then. We had nothing to lose but maybe something to win. And we started.

I believed in the power of the stimulation programs and after all I am happy I did.
We started with HOPE, enthusiasm and a lot of extraordinary people around us. But the world of specialists was not there. Why? Because the literature on Rett syndrome at that time (10 years ago) was very pessimistic. They even thought that it is a degenerative disease. This was based purely on statistics and not on molecular research. But … the problem is that these statistics were only able to tell us about the cases in the past where intensive therapy hadn't been done. And of course, all these girls/women tended to deteriorate in their health and motor skills that much that they were only able to vegetate and receive a handful of medicine each day. Watching them specialists came to the conclusion that Rett syndrome had to be a degenerative proces.

I didn't want ... or I just couldn't accept this. I had no option but to fight. And we started therapy.
Hopefully this view has changed now based on research. Since then Rett syndrome hasn't been described any more as a degenerative process.

In all these years I've had to face many more official prejudices: about life long medication, unavoidability of scoliosis, absence of memory and learning, inevitability of foot deformity, necessity of total anaesthesia at the dentist, necessity of giving up .... and so on.

And to ignore them one by one took a lot of our energy and time. Far more than any intensive therapeutic program could do. So we decided to avoid medical institutions as much as possible. They couldn't help Dejana to get better. Furthermore their deep pessimistic view on Rett syndrome was not the road that I wanted to walk on. In that way we also saved Dejana from the drawer full of medication that usually goes together with Rett syndrome.
Now after all I can say that we are happy with this decision.
But then I had doubts and questions that nobody could answer. No, it is not easy to choose your own way. The only official support that we had was BIBIC and the Brain Train team.

In the meantime I saw a lot of girls with Rett syndrome and I see them againevery year. At the start a few of them were even better functioning than Dejana. They walked better, used their hands, gave good response and could say some words. Now they are very sick despite all the medication and
operations they have been through. I wouldn't be surprised if genetic research one day will show that most of the symptoms in Rett syndrome are the result of today's medical interventions and the lack of a stimulating environment. And that only a few of the symptoms are in direct relation with
gene mutation itself.